Saturday, July 09, 2005

My official diagnosis: “Viral syndrome of unknown etiology"

I believe that I have a form of AIDS that is going undetected by standard HIV screening. Two+ years ago, after a heterosexual sexual encounter, I became seriously ill with what looks like the natural disease progression of AIDS. After an “acute infection stage” and a “period of asymptomatic health”, I have fallen extremely ill to an unrelenting, progressively-worsening physical demise. Whatever I am currently dealing with, it strongly resembles classic “early stage” HIV disease. Upon review of my medical files, it would be reasonable to suspect that I will be an HIV-Negative “AIDS” patient with a bleak future.

As my blood indicates, my body is reacting to its undiagnosed foreign invader with: altered CD4:CD8 ratios; a rapid decline in lymphocyte percentages; a decline in CD3s; inflated LDH, CH50, Cortisol and segmented neutrophils levels; and a low T3 uptake. In accordance, my body is reacting to its immunodeficiency with severe and extensive abnormalities ranging from minor ailments, such as extreme weight loss and debilitating fatigue to far more disturbing lung/thyroid tumors and AIDS-like opportunistic infections.

As worrisome as my health is to me, I am extremely troubled by the strong likelihood that more people are being infected every minute that cases like mine are allowed to go undetected. So, with the immeasurable support of my family and friends, I have decided to wage a loud noisy fight in hopes of sparing more innocent lives.

I have received a tremendous amount of invaluable advice and have spoken extensively with the most senior public health officials in this country. Over the past year, my blood has traveled to CDC-Atlanta (twice) and has tested negative for HIV strains: one, a, b, c, d, e, o, two and generically for reverse transcriptase (i.e. all known HIV’s, HTLV’s, spuma, FeLV, BLV, FIV, CAEV, VISNA, EIAV, BaEV, and GaLV, etc.). I have, however, read about many new HIV strains (a clade n and a highly divergent type two) as well as newly discovered retroviruses: HIAP-II, HTLV-3 and HTLV-4.

While I am relieved to have garnered attention from medical professionals, scientific researchers, and key governmental agencies, I do not feel that their attention alone is enough to spotlight the potentially explosive issue of HIV-Negative AIDS (a.k.a. idiopathic CD4+ T-lymphocytopenia). It is very apparent to me that we have a very big problem on our hands requiring substantially more research, funding, and media coverage.

Those of us who have what seems to be a Non-HIV form of AIDS should certainly think twice before donating blood. For the sake of public health, the American Red Cross should be trying to identify the infectious agent that is in our blood. Even though we do not test positive for HIV, I would hate to think that we are unknowingly and unintentionally spreading a new form of AIDS to our sexual partners. Unfortunately, during my asymptomatic dormancy phase, I believe I transferred my undiagnosed disease to yet another host, a heterosexual man who (after an "acute infection" and a "period of asymptomatic health") is now suffering from his own form of a mysterious illness. For all we know, we are in the early days of a Non-HIV AIDS epidemic.

I have come to appreciate that no one can diagnose us overnight. I just want someone to help me get my body into a medical research study. Why is this such an unreasonable request when you live in one of the wealthiest, most prosperous countries in the world? In an effort to further my cause, I have established a fund in order to make grants to fund my own study. I will knock on every door in the world, if I have to. Tell me, what would you do if you were fighting for your life and potentially the lives of millions of others?

What I need to understand, today, is how new diseases get diagnosed. Who cultures viruses? Who are these scientists? Where are their laboratories? Can you help me find them? How do pharmaceutical companies come to manufacture tests to diagnose diseases?

I welcome your thoughts, prayers, advice, and guidance.